Death… the last taboo
It happens to all of us, so why won't we talk about it?
henever Helen Jamison catches a glimpse of her mum’s picture on the mantelpiece, she smiles sadly.
She lost her mum Gill in 2008 but the pain is still raw.
Gill was diagnosed with ovarian cancer in 2006, when she was just 53.
‘I was there when she had the appointment telling her she had cancer,’ Helen, 38, says. ‘It was a very distressing time for her as well as my dad, brother and me.
‘Mum was a strong, dignified woman, though, who just loved life. We asked doctors about her prognosis but they were quite vague about what we could expect.
‘They said there was still a chance she’d be alive in five years time, but that didn’t help us.
‘We didn’t know if Mum
Whad years left, months or even weeks.’ Gill began chemotherapy treatment but, two years later, her condition deteriorated. ‘The last four months of her life were very difficult,’ says Helen, from Manchester.
‘We were led to believe by her healthcare team that her final moments would be peaceful, calm and comfortable, but this wasn’t the case at all.
‘Mum just wasn’t herself, her personality changed and she became very distressed and aggressive. It was so hard as a family to see her like that. We weren’t warned that this could happen. We didn’t know anything.
‘Towards the end, she slept more and we were told she didn’t have long left. So we brought Mum home and put her bed in the living room.
‘We thought it’d only be a few days. None of us wanted to leave her, in case she slipped away. But Mum clung on for several more weeks and, in the end, we ran out of food in the house.
‘I kept asking doctors about how we’d know when Mum’s time was coming to an end. I wanted to know if there were any signs we could look out for. But nobody seemed to want to tell us.
‘Death and dying is such a difficult subject to talk about, so people just don’t speak about it at all. And, as a result, families like ours are left with unanswered questions and feeling completely unprepared.’ In September 2008,
Gill passed away.
But, as she grieved, Helen was also left feeling lost, confused and disappointed at the lack of information she’d received about her mum’s palliative care. She wanted to help dying people and their families to gain some understanding about what to expect towards the end.
‘Someone told me about
It is estimated that over 21% of all deaths in England take place in a care home.
a charity called Compassion in Dying,’ Helen says. ‘It was looking for new trustees, so I decided to get involved.
‘It was important for me to share my mum’s story and start addressing the issues.
‘Birth and death are the two things we all have in common. Yet death is a subject that’s avoided, and this needs to change.’
Compassion in Dying is focussed on informing people about what rights and choices they can make under the current law concerning their care and treatment at the end of life.
It also aims to empower them to make the decisions that are right for them.
The charity consulted with 600 people and found that they were often not given clear information about their condition, appropriate support to make choices, or sufficient opportunities to discuss their future healthcare and treatment.
To tackle this issue, the charity has launched a new booklet, What Now? Questions to ask after a terminal diagnosis. The booklet uses the authentic voices of dying people and carers, and includes information about the range of thoughts, feelings and experiences people can have after a terminal diagnosis. It also contains important questions that people can take with them to appointments, to help them get the information that’s right for them.
The booklet is designed to help people feel confident and in control, and to help avoid any extra trauma for families who are unprepared for losing a loved one.
‘Support in this form would’ve been invaluable to me,’ Helen says. ‘Just having that information, knowing who to ask what questions and where I could go to get the support I needed, would’ve helped me come to terms with losing my mum.
‘I just hope other people will benefit from it. Dying is something that we all face, so we need to start talking about it. Fearing it isn’t healthy.
‘However, being prepared and knowing what to expect can make the process a lot easier to accept.’
We live so much longer. Just over a century ago, the average life expectancy for men was 48, 54 for women.
Helen with Gill when she got her Masters